The Legacy Of Lisa Bonchek Adams

In a previous post, we wrote about Lisa Bonchek Adams, a cancer patient who blogged and tweeted extensively about her illness.

In January 2014, Lisa was lambasted by reporters from The Guardian and The New York Times for what they viewed as oversharing about her experience with metastatic breast cancer. The reporters felt that she should fade into the background and let the end come.

But fade into the background, Lisa did not. She continued to chronicle her experience, until the very end.

Unfortunately, Lisa passed away on March 6, 2015, at the age of 45 years old.

When we talk about supportive care, it comes from a lot of different places. In some ways, the illness communities that have been created and maintained online, provide a tremendous amount of support to patients, and most often that support comes directly from other patients.

Lisa didn’t just make an impact on the cancer community, she made an impact on the entire community of bloggers and tweeters that share their illness stories with the world, and will continue to do so.

Those who followed Lisa were impressed with her honesty, and with her ability to so beautifully describe such a difficult facet of life. For me, the post that resonates with me the most is When I Die. The post is in the form of a poem, and does nothing to sugarcoat the harsh realities of how dying impacts the people you leave behind. Lisa wrote in part, “Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:/ There is no better place to me than being here with them.”

Lisa didn’t like the metaphors about battles and fighting. She didn’t want to be remembered for how she died, but rather, for how she lived.

To fully comprehend the impact that Lisa had, her death was widely reported, including in The New York Times and Time magazine, and 358 comments were left on the In Memorium post that was posted on her blog the morning following her death.

The power of storytelling, and reclaiming your own story when illness robs you of so much control, is an essential piece of coping with illness. Not everyone feels the need to be so open and public about their story, as Lisa was, but sharing the patient story makes other patients feel not so alone.

On the flipside of that, however, is that by being open and sharing your story, you open yourself up not just to those fellow patients that get you, but also to people who aren’t sick, who may not get it, and can sometimes be downright cruel.

I recently had the experience of attending the American College of Rheumatology Conference in Boston. The conference is geared toward doctors, but a group of patients was able to attend. I wore my “I Am The Face of Arthritis” t-shirt, and people stared at me. I got looks of derision.

I was completely taken aback by the experience. Yes, the conference might be for doctors, but doctors treat patients. And without patients, doctors wouldn’t have jobs. This experience also shows how some doctors have difficulty interacting with patients outside of the clinical setting. Instead of meeting patients where they are, doctors keep up a wall; and while they may remain objective, they fail to take account of the subjective aspects of being a patient.

The point is, there needs to be space for the voices of patients, not just online, but at conferences and symposiums, in places where patients have not gone before.

While most of us never met Lisa, as a community, we feel the collective loss when someone passes away, especially someone whom we felt we got to know because they shared some of their most intimate moments with us.

We shouldn’t underestimate the power of our voice in the patient experience. And we should see it as part of mainstream treatment in coping with a serious illness.